What is a Pseudoseizure (PNES)?

Seizures are commonly called ‘fits’, and when asked ‘what causes a fit/seizure?’ many people would say epilepsy, quite rightly because that is the most common cause of seizures. But there are many other causes of seizures ranging from head injuries, to eclampsia in pregnant women, and even brain cancer. Epileptic seizures are a product of abnormal electrical activity in the brain which results in the patient losing control of their physical functions. The seizure is not itself a medical condition, but always a symptom of something else. The causes mentioned above are all of physical/organic conditions which affect the brain’s electrical activity. Some seizures however, are not the result of a person’s physical/organic condition, but as a result of their mental health state. These are properly known in the medical journals as psychogenic non-epileptic seizures (PNES), dissociative seizures, functional seizures, or non-epileptic attack disorders (NEAD), but they are very commonly called pseudoseizures. They are distinct from epilepsy because there is no abnormal electrical abnormality in the brain.

How is PNES identified?

It is normally only specialists in the treatment of seizures, such as a neurologist, that can spot the physical differences between an epileptic seizure and PNES. Common symptoms between the two conditions are falls resulting in physical injury and a loss of bladder function for the period of the seizure. However, in PNES the movements of the body, the length of the seizure, and the frequency of seizures will not follow the pattern that is observed in epileptic seizures.

Whilst a diagnosis of PNES, using observational and documented information can be made by specialists, because the observations are very often reports by friends and family members, and the specialist has not seen the patient in a seizure, there are risks of misdiagnosis. Some family members will video the patient as part of the report, but because they are connected with the patient, often such videos will not provide the objective observation that the neurologist requires for diagnosis.

The most authoritative test for PNES is to use an electroencephalogram (EEG) examination to measure the electrical activity in the brain of the patient whilst the seizure is happening, alongside a concurrent video recording. This is known as video-EEG monitoring. It does require that the patient is ‘stimulated’ into a seizure, and that itself can form part of the diagnosis. If the person is suffering from PNES there will be no abnormal electrical activity in the brain recorded during the period of the seizure.

It is important to note that the physical effects of PNES are real and the patient is as much at risk of harm as is they were having an epileptic seizure.

Symptoms of those suffering PNES can include:

  • Numbness and tingling
  • Fatigue
  • Pain in various places
  • Headache, often constant
  • Poor concentration
  • Memory problems
  • Poor sleep patterns
  • Difficulty in speaking
  • Blurred vision
  • Feeling distant from others
  • Dizziness with no apparent cause
  • Limb weakness
  • Frustration and anger with no apparent cuase
  • Low mood or depression
  • Worry over what should be insignificant issues
  • Panic with no obvious cause
  • Bladder problems
  • Bowel problems

What causes PNES?

It is believed that between 15 and 30 people in every 100,000 have PNES. The seizures can occur when a person has trouble handling their thoughts, emotions or memories. Often these will be associated with stress, but PNES is also seen in people where there is no apparent external factor, and even they cannot understand why how they developed the symptoms. As a psychological condition there may be many triggers for the patient to have a seizure, many of which they are not aware of.

How can it be treated?

Unfortunately, because of poor diagnosis and confusion with epilepsy in the past, potentially 70% of people with PNES have been treated with anti-epilepsy drugs, sometimes for many years. Such drugs have no effect on the seizures, but the patient can become dependent upon them. Withdrawal from such drugs must be planned with a neurologist. Some of the anti-epilepsy drugs can also cause abnormal electrical activity in the brain, potentially reinforcing the diagnosis of epilepsy after an EEG.

Clinicians, and those supporting people with PNES, try to avoid the term pseudoseizure as ‘pseudo’ is often regarded as a term for ‘false’. But is far from ‘false’ as a condition, and it is often difficult to address, with some reports of successful treatment using talking therapies such as cognitive behavioural therapy (CBT) being as low as 35%.

CBT is the primary treatment for PNES, but it can be supplemented with anti-depressants such as Selective serotonin re-uptake inhibitors (SSRIs). However about 15% of people with non epileptic seizures also have epilepsy so there is often an overlap in treatments.

Patients themselves can deal with PNES by recognising the triggers that send them into seizure, and either avoid those triggers, or minimise their exposure to such triggers.

What is the prognosis for someone diagnosed with PNES?

Some people with PNES recover fully, do not have further symptoms and can lead normal lives. However, in the UK it is believed that approximately half the people admitted to Accident and Emergency (A&E) departments with symptoms of epilepsy actually have PNES. 60% or more of patients suffering for PNES cannot break the often learned cycle of seizures associated with stress and thus a seizure. There is often a reluctance in sufferers of PNES to accept that they do not have epilepsy, and this can be as debilitating as the condition itself and restrict them from addressing the condition.

In the UK, people diagnosed with PNES, like those with epilepsy, have to surrender their driving licences unless their neurologist can advise otherwise.

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